Original Research The impact, perceptions and needs of parents of children with epidermolysis bullosa

Antoinette V. Chateau, David Blackbeard, Colleen Aldous, Ncoza Dlova, Cassidy-Mae Shaw

South African Family Practice | Vol 66, No 1 : Part 3| a5897 | DOI: https://doi.org/10.4102/safp.v66i1.5897 | © 2024 Antoinette V. Chateau, David Blackbeard, Colleen Aldous, Ncoza Dlova, Cassidy-Mae Shaw | This work is licensed under CC Attribution 4.0
Submitted: 09 January 2024 | Published: 06 June 2024

About the author(s) Antoinette V. Chateau, Department of Dermatology, Faculty of Health Sciences, Greys Hospital, Pietermaritzburg Department of Dermatology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
David Blackbeard, Department of Psychology, Faculty of Health Science, Greys Hospital, Pietermaritzburg Department of Psychology, Faculty of Health Science, University of KwaZulu-Natal, Durban, South Africa
Colleen Aldous, School of Clinical Medicine, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Ncoza Dlova, Department of Dermatology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Cassidy-Mae Shaw, Department of Psychology, Faculty of Health Science, Greys Hospital, Pietermaritzburg, South Africa

Abstract

Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a child with this painful condition can have a profound effect on the quality of life of parents and the family. There is currently no published research on the lived experience of parents caring for a child with EB in a resource-limited environment in Africa.

Method: This qualitative research used interpretative phenomenological analysis with the aim of understanding the lived experiences of parents caring for children with EB. Semi-structured interviews were conducted with 13 participants between May 2022 and October 2023. Guba’s framework of trustworthiness was used to ensure rigour.

Results: Seven experiential themes with associated sub-themes were identified. The themes were (1) grappling with understanding EB, (2) the psychological experience, (3) living with the responsibility, (4) barriers to feeling supported, (5) changing relational dynamics, (6) experience of healthcare professionals and (7) parental needs.

Conclusion: Parents caring for children with EB face emotional, physical, psychosocial and financial challenges. Addressing parents’ needs and concerns will go a long way in decreasing this burden. A biopsychosocial approach with an awareness of cultural context is essential for family-centred holistic EB care.

Contribution: This is the first study in Africa that focussed on the lived experiences of parents caring for a child with EB.

Keywords

epidermolysis bullosa; parents; interpretative phenomenological analysis; impact; perceptions; needs

Sustainable Development Goal

Goal 3: Good health and well-being

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